MPs debate allowing assisted dying at 12 months left for those with neurodegenerative illnesses

MPs scrutinising the Terminally Ill Adults (End of Life Choices) Bill have debated an amendment that would have allowed those with neurodegenerative illnesses to access assisted dying when they have twelve months or fewer to live, rather than six. Following the debate, the amendment was withdrawn due to lack of support, with some MPs who support the Bill concerned about the Committee alone deciding to change eligibility criteria without the views of the wider House. Campaigners have expressed their disappointment at the outcome.

The amendment was proposed by MPs from the Labour Party, Conservatives, Liberal Democrats, and Green Party, and supported by Humanists UK and My Death, My Decision as well as the public. 

The amendment’s primary sponsor was Tom Gordon MP, who withdrew the amendment after the debate over fears that the amendment could negatively impact the chances of the Bill passing in later stages.

Fellow committee member Rachel Hopkins MP spoke in support of it. She mentioned:

‘Diane Pretty was from Luton… 25 years ago she was diagnosed with motor neurone disease and tried to change the law then, so she could access assisted dying because of the pain and suffering she endured because of her terminal illness. 

‘She said, which is fundamental and at the heart of what we are trying to do here 25 years later: “I want to have a quick death, without suffering, at home and surrounded by my family”. In the end Diane Pretty was not successful, she died aged 53… She didn’t have a choice, she could not choose the death she wanted. Much has been said about rushing the Bill, but that was 20+ years ago.’

Tom Gordon, MP for Harrogate & Knaresborough, who proposed the amendment said:

‘Extending the eligibility period to 12 months for those with neurodegenerative conditions remains a compassionate approach, however, I decided to withdraw the amendment. My priority is ensuring that we make progress on assisted dying legislation, and I do not want to risk delaying or jeopardising the Bill’s success by pushing for changes that might divide support at this crucial stage. I remain committed to advocating for those with neurodegenerative conditions and will continue working towards a law that is as fair and inclusive as possible.’

Humanists UK Chief Executive Andrew Copson commented:

‘It is disappointing that this amendment was not taken up. It would have extended the hope offered by this Bill to the large number of terminally ill people who are not covered by a six-month limit. All terminally ill people deserve the dignity of choice that legal assisted dying will afford.

‘While we regret this outcome, we continue to support the unamended Bill, as a once-in-a-generation opportunity to bring choice at the end of life to those many people that it will help.

My Death, My Decision Chair Aleisha Murray commented:

‘We know that many people living with neurodegenerative conditions are dismayed that MPs have decided not to give them the choice offered by this Bill, leaving them to face prolonged and unbearable suffering that could be avoided. The six-month limit fails to account for the realities of diseases like motor neurone disease, where prognosis is uncertain and many may lose mental capacity before they become eligible.

‘While we regret this missed opportunity for a more compassionate law, we remain steadfast in our support for the Bill as a crucial step toward giving people the dignity and autonomy they deserve at the end of life.’

Why the amendment was proposed

The amendment would have aligned England and Wales’s assisted dying law with that found in most of Australia and would be particularly important for people with Motor Neurone Disease (MND), Huntington’s, Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and Corticobasal Degeneration (CBD), as well as some people with Parkinson’s. Under the Bill, some people with these conditions who meet the eligibility criteria of terminal illness would be excluded as the six-month limit is frequently past the point at which they need an assisted death – and sometimes it is past the point they can even be granted one.

Every UK resident who travels to Switzerland for an assisted death has a debilitating condition meaning they need an assisted death. But most do not have six months or fewer to live and so would not fit the criteria of the current Bill. The ‘six-month’ definition of terminal illness currently exists in law only in parts of the United States and in New Zealand. But even in New Zealand, yearly reports on assisted dying indicate that being unable to confirm a six-month prognosis is the primary barrier for eligibility. There are now proposals to extend it.

Motor Neurone Disease kills six people per day in the UK. 45% of people living with MND say they’d consider assisted dying if the law changed. The MND Association highlighted in its evidence to the committee that the six-month criteria is problematic as prognosis is incredibly difficult and for many the suffering is too great to mean that they can wait that long. Some will also lose mental capacity if forced to wait.

The Multiple System Atrophy Trust similarly said in its evidence that the six-month criteria is problematic, stating that 85% of people living with Multiple System Atrophy who have a view support a change to the law. The amendment will also extend choice at the end of life to the almost 8,000 people living with Huntington’s in the UK, many of whom would otherwise be excluded from the Bill for similar reasons as described above.

And the PSP Association similarly highlighted in its evidence to the committee that the six-month criterion is problematic for people with Progressive Supranuclear Palsy and Corticobasal Degeneration. And during oral evidence, several witnesses made similar points, such as Sir Nicholas Mostyn and experts from Australia.